State Examples Related To Goals and Priorities

In collaboration with the Association of Schools of Public Health, CDC established the first Centers for Genomics and Public Health at the Universities of Michigan, North Carolina and Washington in 2001.  These Centers became hubs of expertise that built on and complemented existing university programs and created links with state and local health departments.  In collaboration with CDC, these centers completed two web-based training programs for public health professionals: 

• Genomics for Public Health Practitioners, describes the application of genomics to public health, dispels myths about genomics and identifies challenges in public health genomics. 
• Six Weeks to Genomic Awareness was a series of six presentations aimed at helping public health professionals understand how genomic advances are relevant to their work.

In 2005, the Universities of Michigan and Washington were awarded funding to continue their work in public health genomics.  Current objectives are to facilitate the integration of genomics by:

• Providing technical assistance and competency-based training.
• Collaborating with CDC projects such as the Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Project and the Family History Public Health Initiative.
• Disseminating credible and impartial information.
• Collaborating with public health agencies and other external partners.

In July 2003, CDC established cooperative agreements with the state health departments in Michigan, Minnesota, Oregon, and Utah to assist in developing and expanding their capacity to integrate genomic tools (e.g., family history assessments) and knowledge into state public health programs for improved health outcomes. These states are demonstrating that genomics can be successfully integrated into programs by:

• Establishing infrastructure and collaborations within their state health departments.
• Developing partnerships with CDC, Centers for Genomic and Public Health, and other states and partners.
• Educating the public health workforce.
• Assessing the integration of genomics into population-based surveillance, for example by adding genetic questions to Behavior Risk Factor Surveillance System (BRFSS) surveys.
• Promoting family history as a screening tool to identify high risk populations and target prevention messages and collaborating with CDC’s Well Integrated Screening and Evaluation for Women Across the Nation (WISEWOMAN) project.

Assess the Role of Family History in Risk Assessment and Disease Prevention

Public Health Problem

Family health history reflects both shared genetic susceptibility and exposure to common environmental, behavioral, and cultural factors that may contribute to diseases, such as diabetes and heart disease. This information can be used to identify individuals who are at increased risk for these diseases. Such individuals can then be targeted for preventive measures, such as health screening and behavior change strategies.

Family health history is often underutilized in preventive medicine, or it is used ineffectively. Certain types of family history information (e.g., relationship of affected family member, type of disease, age of diagnosis, and number of affected family members and their lineage) should be collected to accurately assess risk. This information should be collected, recorded, and updated in patient charts in a way that is accessible to physicians. However, this information is often not documented at all, or only partial information is documented in the patient charts.   

Program Example (Michigan and Utah)

In 2005, NOPHG-funded genomics programs in Michigan and Utah departments of health conducted medical chart reviews within clinics in their respective states. The purpose of these reviews was to identify whether family health history was being recorded and updated in patients’ charts, and to examine the types of information recorded, by whom, and through what means.

• The Michigan genomics program collaborated with the Michigan Cancer Registry to conduct medical chart reviews in 23 clinics randomly selected throughout Michigan.  In all, 853 charts from December 2003 to October 2004 were systematically reviewed for the presence or absence of documented information on family history of cancer. The reviews revealed that about 83% of charts included family history information. Of these charts, 89% included the gender of the affected family member, and 82% included the tumor-site of the family members’ cancer diagnosis. However, 94% did not have information on the family members’ ages at diagnosis.

• The Utah genomics program contracted with the University of Utah School of Medicine to conduct medical chart reviews in 12 family practice clinics randomly selected from four counties in Utah. In all, about 400 charts from July to September 2005 were systematically reviewed.  Documentation of family history of chronic health conditions was found in 60% of charts reviewed. This information was documented most often using a questionnaire format (39%), or in physicians’ notes (34%). Of those charts with family history, 64% included the family relationship for each chronic condition reported, 17% included family relationship for some conditions, and 18% did not include this information. Of the charts with family relationship, 8% included the age of onset for all conditions reported, and 18% included this information for some of the conditions reported.   

Results and Impacts to Date

The chart reviews conducted by the Michigan and Utah genomics programs showed that, although many charts documented family history, important types of information were lacking, such as family relationship and age of onset for reported chronic health conditions. This information is critical for assessing hereditary risk. Also, the charts did not have a standardized approach for recording and updating the family history information, nor was there a standard list of diseases for which this information should be documented.

• The Michigan genomics program is working with the Michigan Cancer Registry to improve the documentation and use of family history information by physicians, and to increase awareness among patients. Key activities are inclusion of a mandatory family health history question in the Michigan Cancer Registry in 2007, educating physicians on recommended practices, and encouraging patients to routinely collect and record their family history information and share this information with their physicians.
  
  The success of this project prompted the Michigan genomics program to work with an insurance plan, HealthPlus of Michigan, to conduct a second chart review in 2005, this time on chronic health conditions. In all, 250 charts from 50 physicians were reviewed, and showed similar findings on the presence or absence of family history information. Another chart review is planned for 2006, using a revised data collection tool which has been expanded to include questions about physician referrals for genetic services, use of folic acid, and birth defects.  

• The Utah genomics program, in collaboration with the University of Utah School of Medicine, has developed a set of recommendations for family physicians to collect and document family history. These recommendations aim to standardize this process by providing a list of chronic health conditions for which family history information should be documented, and by describing specific information to be collected using suggested approaches or tools.
  
  The Utah genomics program is working with the American Academy of Family Physicians, Utah chapter, to raise awareness of the chart review results and recommendations (mentioned above) among the academy’s membership. In 2005, the Utah Genomics Program published articles in the membership newsletter, and collaborated on genomics activities (e.g., workshop).